PATIENT PARTNERS ADVANCING RESEARCH
“My years at KRECENT as a patient partner with PCAN have been memorable. As I get ready to step down in May, I reflect on the past years. KRECENT and PCAN have come so far and changed so much with our direct interaction between patient partners, nephrologists, and researchers. Our patient partners are front and centre and very engaged and appreciated. We feel very much a part of the research process from inception to delivery.”
Patient involvement in research has emerged as a cornerstone of modern medical and scientific advancements.
By integrating the voices of those most affected by medical conditions, research becomes more relevant, impactful, and human-centered.
Tips for patient partners to maximize their contributions and experiences in research.
Understand Your Role
Understanding your role, responsibilities, and how your input will shape the research clarifies expectations.
Share Your Thoughts
Don’t hesitate to ask questions if something isn’t clear. Your lived experience is invaluable—be open and honest about it.
Build Relationships
As a patient partner you are an important member of a collaborative team. Represent your community’s voice and bring back learnings to them.
Set a Schedule
Maintain notes on meetings, decisions, and your contributions. Set boundaries in order to manage your time and energy, especially if you’re juggling personal health concerns.
Advocate for Inclusivity
Encourage the research team to use plain language and consider diverse perspectives. Advocate for the inclusion of underrepresented groups in research design and recruitment.
Take Care of Yourself
Know your limits. Engage at a level that aligns with your energy and capacity, and reach out to peers or facilitators if you feel overwhelmed.
Celebrate Impact
Recognize your involvement’s impact and influence, and help others understand the value of patient partnership in research.
Gone are the days when patients were seen as passive recipients of care; today, they are active collaborators, shaping the research agenda to better address real-world needs. This approach not only enriches the research process but also delivers tangible benefits to both patients and the broader healthcare community.
When patients contribute to research, they provide unique insights grounded in lived experience. Their perspective helps researchers by highlighting issues that matter most to their communities, ensuring research focuses on real-world problems.
There is also a direct, positive impact on those engaged in research. Patient partners can gain a deeper understanding of their conditions and the research process, ensuring they are better equipped to advocate for their health needs. Participating in research empowers patients by giving them a voice in shaping the future of healthcare. Sharing their experiences also encourages others to participate in research, amplifying the collective impact, while sustained collaboration leads to ongoing improvements in healthcare systems.
In 2011, the Canadian Institutes of Health Research (CIHR) launched the Strategy for Patient-Oriented Research (SPOR) with a vision to “demonstrably improve health outcomes and enhance patients’ health care experience through integration of evidence at all levels in the health care system.” Can-SOLVE CKD Network, one of the five chronic disease networks funded by SPOR, has become Canada’s largest-ever kidney research initiative. Can-SOLVE’s patient-led initiative, Kidney Check, focuses on developing early detection programs for CKD in at-risk communities. (The Kidney Foundation of Canada was one of several funding partners supporting Kidney Check.)
Dr. Adeera Levin, one of the Network’s co-principal investigators, shared how patient partner and community members worked together with the research team to define an approach that is patient- and community-centric. This approach has resulted in a program that is more relevant and meaningful to those it serves and has enhanced uptake of the screening program. “As a result, the team has been welcomed into communities, conducted many engagement sessions. and provided screening and kidney health education to more than 500 participants in British Columbia alone.”
Overcoming Barriers to Patient Participation
Despite its benefits, patient involvement in research faces challenges, including lack of awareness, logistical barriers, and misconceptions about the research process. To address these issues, stakeholders are working on raising awareness and educating patients about research opportunities and their potential impact.
The Kidney Foundation understands that encouraging patient participation is not just an ethical imperative but a strategic advantage that can propel healthcare innovation to new developments. To help studies in need of patient partners, the Foundation has dedicated a page on kidney.ca to share opportunities to participate in a study or clinical trial. The involvement of patients in research is more than a trend—it is a transformative approach that bridges the gap between science and society. By integrating the voices of those most affected by medical conditions, research becomes more relevant, impactful, and human-centered.
Canadian studies requiring patient input on experiences with CKD, diet quality, knowledge of precision medicine, IgA nephropathy and other knowledge areas are added to the list on an ongoing basis. There are also a number of clinical trials posted, as well as opportunities for those with lived experience in kidney disease wishing to become engaged in research to assist as a peer reviewer. In collaboration with the Canadian Donation and Transplantation Research Program, Can-SOLVE CKD, Canadian Nephrology Trials Network, The Kidney Research Scientist Core Education and National Training (KRESCENT), and a working group of lived experience reviewers, The Kidney Foundation of Canada developed a peer review module to provide training for those who want to participate in the peer review process.
The KRESCENT Program’s main goals are to enhance kidney research capacity in Canada and to foster collaborative research and knowledge translation. It has also implemented a robust lived experience engagement process to further patient involvement in research. The Patient Community Advisory Network (PCAN) is embedded within the KRESCENT Program to provide valuable leadership and mentorship to KRESCENT trainees on how to engage patients in research. People with Lived Experience also take part in the peer review process for the KRESCENT Program. Patient engagement in research will continue to evolve and remain a central component in The Kidney Foundation of Canada’s research programming.
Nancy Verdin shares how being a patient and family advisor with KRESCENT has given her two important opportunities. “First to work closely with new investigators to help them understand the role of patient and family advisors in all levels of research. Secondly, working closely with our diverse and growing patient and community network I have learned more about lived experience and the wealth of knowledge our members bring with them.”
Today, patient-oriented research is playing a critical role in advancing kidney disease research and improving outcomes for patients living with chronic kidney disease, end-stage renal disease, and other kidney-related conditions. By incorporating patient feedback, researchers can create study protocols that are more practical and participant-friendly. Co-creation with patients can result in therapies that are more tailored and effective. When patients are involved in research, it strengthens the trust between them and the scientific community.
Learn more about using your lived experience to impact research and the future here.
Contributor: Julie Wysocki, Acting Director, Research, Kidney Foundation